posted by BBB Member Sue

"This was in BBB last Spring. I asked the Autism Resource Specialist in our local SERRAC about them and she confirmed that these are the official numbers, although they include everyone in the school system anywhere on the spectrum, including Aspergers Syndrome, etc.  Even so, it is shocking!

I wonder what they are this year? - Sue"

an opinion by "Dad"

Point 1) These numbers came from US DOE Office of Special education Services. I believe these are the prevalent rates of autistic kids out of all Special Ed students, not out of all students, or all children (remember that any children completely out of the public school system will not be on this list, as in those in academies or home-schooled). If we apply the basic formula that Special Ed students represent approximate 20% of the total student population (fully included, Section 504 and gifted are all Sped students too), then we can see that these prevalence rates need to be divided by 20% to arrive at the rate out of all students. This makes Oregon's rate as posted 1/32 really about 1/160, which would mirror the CDC's findings in Brick, NJ in 1999 (7 in 1,000), and also be close to the rate reported to Congress from the California Centers in 2000, and the US DOE internal memo "leaked" in Fall 2000, both of which used 1 in 150.

Question 1) Oregon "leads" the nation on this listing... Is that because parental activism, a low population density and availability of quality diagnosticians make them more accurate than other states, or are their children being misdiagnosed as autistic which really aren't? We do not have the answer to that one.

Question 2) It is no secret that many states, notably poor states, rural states, and states with large populations of minorities have less access to quality diagnostic services, and so will miss a lot of children, leading to artificially low prevalence rates. How many of the states which posted a lower than 1 in 150 prevalence rate would fall under this?

Point 2) There is no way of knowing for sure whether the same diagnostic criteria were used in all 50 states. Most will adhere to DSM-IV, but there is still a good bit of subjective leeway in this, because it is applied thru observation of the child. One person may see autism where someone else does not. We have no way of knowing where the cut-off point is for all persons doing the labeling is in regards to Asperger's, PDD-NOS, CAPD, etc.

Point 3) I don't know about your state, but in my state the schools intentionally mislabel children who are autistic as MR or MI. This is done to prevent being found to be out of compliance with Federal guidelines for teacher certification. As the listing above is compiled not by independents, but simply compiled from the reporting of the states in their Federal reporting, many of the numbers will be suspect.

The Brick Study was done under the very close watch of a very determined group of parents who feared that some specific industrial toxin was responsible. The DC had no choice but to count the children accurately. The California Report was done by the Centers servicing these children, and was based on caseload of confirmed diagnosis. I trust both of those numbers as fairly accurate.

Contrast that with the recently completed study the CDC funded thru Marshall University, which found a much lower rate of incidence in their targeted counties. There are inherent flaws with their study however, notably the reliance on only those children either diagnosed through the ATC, or receiving services in the public schools. Who they avoided including were any autistic kids who were strictly home schooled (and autistic children are the most commonly home schooled group of Special Ed students going) and any of the older autistics who may have already gone in to residential care. The ATC concealed these omissions by lumping all the children counted into two population, EI and school age, and then refused to release any of the notes, claiming they were embargoed.

Best guess at this point in time... Children born after '93 are autistic at the rate of about 1 in 150 regardless of where in the country they are. That works out to approximately 1 in 94 boys (1.067%), and 1 in 375 girls (0.267%).

Scary badness.